Innovative Meeting Announced to Address Drug Development for Idiopathic Hypersomnia
On November 26, 2024, the Sleep Consortium announced the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for February 13, 2025, from 12 PM to 2 PM EST. This virtual session is designed to address crucial drug development challenges related to idiopathic hypersomnia (IH). This meeting builds on insights gained from the Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting that occurred on April 11, 2024.
The Illuminate meeting will convene a diverse group of experts, including specialists in sleep medicine, pharmaceutical research, regulatory science, and patient advocacy. The primary aim is to foster collaborative strategies that can overcome barriers in creating effective treatments for IH, a rare neurological disorder characterized by excessive daytime sleepiness (EDS) and a host of other debilitating symptoms. These symptoms include severe difficulty waking up, prolonged nighttime sleep, unrefreshing naps, and a range of cognitive and autonomic challenges.
The meeting's agenda is informed directly by findings from the Voice of the Patient report, enriched by extensive feedback from nearly 800 individuals affected by IH across 21 countries. This feedback was collected during the EL-PFDD meeting and a detailed survey, shaping the key discussion points for the upcoming scientific conference.
Among the significant topics for discussion will be a detailed exploration of 'brain fog,' a disabling symptom frequently experienced by those with IH that can persist even when members transition from sleep to being awake. Participants will aim to establish better definitions and measurement approaches for this symptom in clinical studies and trials focusing on IH treatment. Moreover, the meeting will delve into various barriers that hinder participation in IH research, exploring potential strategies for recruiting and retaining individuals in these essential studies.
Expert panelists will focus on the challenges faced by the IH community, addressing unmet needs and exploring solutions to enhance patient outcomes. Lindsay Jesteadt, Co-founder and CEO of the Sleep Consortium, emphasized the importance of the feedback gathered during the EL-PFDD meeting, highlighting how it showcased the urgent need for accelerated research and innovative approaches in IH treatment development.
The Illuminate Hypersomnia initiative received valuable support from several renowned organizations and was made possible by unrestricted educational grants from corporations committed to advancing understanding and treatment options for IH. These include Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.
The Illuminate Hypersomnia Adjunct Scientific Meeting presents a unique opportunity for global participation, with registration open to all. Attendees can join remotely, making it convenient for those interested from around the globe. To register and obtain more event details, individuals are encouraged to visit the Sleep Consortium's official website at sleepconsortium.org/IH-ASM/.
The Sleep Consortium operates as a not-for-profit organization dedicated to advancing research, understanding, and treatment options for central disorders of hypersomnolence, particularly focusing on idiopathic hypersomnia. The Consortium aims to uplift the lives of those affected by these challenging conditions through innovative research and collaborative efforts.
The Illuminate meeting will convene a diverse group of experts, including specialists in sleep medicine, pharmaceutical research, regulatory science, and patient advocacy. The primary aim is to foster collaborative strategies that can overcome barriers in creating effective treatments for IH, a rare neurological disorder characterized by excessive daytime sleepiness (EDS) and a host of other debilitating symptoms. These symptoms include severe difficulty waking up, prolonged nighttime sleep, unrefreshing naps, and a range of cognitive and autonomic challenges.
The meeting's agenda is informed directly by findings from the Voice of the Patient report, enriched by extensive feedback from nearly 800 individuals affected by IH across 21 countries. This feedback was collected during the EL-PFDD meeting and a detailed survey, shaping the key discussion points for the upcoming scientific conference.
Among the significant topics for discussion will be a detailed exploration of 'brain fog,' a disabling symptom frequently experienced by those with IH that can persist even when members transition from sleep to being awake. Participants will aim to establish better definitions and measurement approaches for this symptom in clinical studies and trials focusing on IH treatment. Moreover, the meeting will delve into various barriers that hinder participation in IH research, exploring potential strategies for recruiting and retaining individuals in these essential studies.
Expert panelists will focus on the challenges faced by the IH community, addressing unmet needs and exploring solutions to enhance patient outcomes. Lindsay Jesteadt, Co-founder and CEO of the Sleep Consortium, emphasized the importance of the feedback gathered during the EL-PFDD meeting, highlighting how it showcased the urgent need for accelerated research and innovative approaches in IH treatment development.
The Illuminate Hypersomnia initiative received valuable support from several renowned organizations and was made possible by unrestricted educational grants from corporations committed to advancing understanding and treatment options for IH. These include Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.
The Illuminate Hypersomnia Adjunct Scientific Meeting presents a unique opportunity for global participation, with registration open to all. Attendees can join remotely, making it convenient for those interested from around the globe. To register and obtain more event details, individuals are encouraged to visit the Sleep Consortium's official website at sleepconsortium.org/IH-ASM/.
The Sleep Consortium operates as a not-for-profit organization dedicated to advancing research, understanding, and treatment options for central disorders of hypersomnolence, particularly focusing on idiopathic hypersomnia. The Consortium aims to uplift the lives of those affected by these challenging conditions through innovative research and collaborative efforts.
Topics Health）
【About Using Articles】
You can freely use the title and article content by linking to the page where the article is posted.
※ Images cannot be used.
【About Links】
Links are free to use.